Symptom Management

Depression Warning Signs for MS Caregivers to Watch out for

By Francesco Pagnini, Ph.D. and Deborah Phillips, Ph.D.

Most people are familiar with the concept of depression. It is a commonly used word, associated with feeling “blue” or simply feeling sad. Sometimes people say “I feel depressed,” meaning that their mood is low. Everybody experiences this type of mood fluctuation, which is part of life’s natural changes. However, the concept of major depression refers to something different, one that signifies a more severe mood extended in time. It is among the more painful of human experiences, characterized by a persistent feeling of sadness and disengagement from life’s events. Depressive features can interfere with every aspect of life, including social relationships, work, emotional stability, and physical health. Depression is a “democratic” experience, experienced by many people without regard to one’s socio-economic status, education, and general health.

Statistics suggest that having a diagnosis of multiple sclerosis increases the odds of a diagnosis of major depression. MS-related changes in the brain and immune system often promote depressive symptoms and can arise as a side effect of certain drugs.

It may be useful to identify the main features of a depressed condition and the main predictors. Depression is characterized by sad mood and/or a loss of interest in daily activities for a time frame of several days – generally around two weeks. There is commonly a decrease in pleasure in activity and an increase in irritability. Not infrequently, there are changes in appetite (either increasing or decreasing) and in sleep patterns (insomnia or hypersomnia). Other physical symptoms such as loss of energy, psychomotor retardation (a slowing of thought or reduction of physical movement), or agitation are difficult to interpret because of other MS symptoms. Additional elements that characterize a depressive episode include the expression of feelings of worthlessness or guilt, as well as difficulty concentrating. In the most severe situations, persistent thoughts of death or suicide are present, either expressed or enacted.

It is not always easy to distinguish depression from sad mood or grief. For example, consequences of MS symptoms such as physical impairment can lead to experiencing a state similar to depression, a “reactive depression,” or a form of grief precipitated by events, such as the diagnosis or the loss of a job. That requires some time to resolve itself. The difference is not categorical (i.e., there is no “depression” vs. “grief”); rather, there is a continuum between them. The two important elements to understand whether the depressive condition requires a specific intervention are timing and severity. Timing refers to the evolution, day-by-day, of the person’s mood. Most people experience fluctuations in their mood such that a “very sad” day may be followed by a more serene one. If there are fewer fluctuations within some periods (e.g., a week) so that one retains the sad mood, there is a greater chance that the mood is in the area of depression. Severity is the other important element. Deep and constant sadness indicate something different than occasional moments of emotional distress or discomfort.

A practical suggestion to substantiate the difference between a period of sadness and a case of depression is to propose one or more activities that the person used to enjoy (e.g., cooking a particularly appreciated dish or watching a movie). This could help in understanding the severity of the grief, and it can also help provide a new point of view (i.e., you can have positive experience). A lack of interest in things that were previously exciting for the person could represent a depressive feature. Furthermore, the disengagement from activities may have a further negative effect in mood, along with a downward spiral.

Severe sadness, as well as other emotions, have a halo effect over the fabric of social relationships. In particular, people close to the person facing a depressive episode may experience similar feelings, an expression of their own empathy. (Empathy means feeling the other’s feelings as if they were your own.) There is a strong variability in empathy across people, but it is not uncommon that the main caregiver feels what the other person feels, in terms of emotions and sensations. Therefore, a caregiver’s subjective feelings of severe sadness, sense of guilt, helplessness or worthlessness experienced when close to the (possibly depressed) person could represent an alarm.

Nowadays, it is possible to face even severe depression with innovative and integrated approaches. Psychotherapy and medications are available and are able to support the exit from the depressive episode. Sometimes the person with MS (especially when he/she is facing depression) is not the only one who can benefit from professional support. Professional support can help the caregiver coping with adversities. And, sometimes, it can remind us that everyone has their own needs, caregivers included.
Francesco Pagnini, PhD is a member of the Department of Psychology, Harvard University, Cambridge, Mass., and the Department of Psychology, Catholic University of Milan, Milan, Italy.

Deborah Phillips, PhD is a member of the Department of Psychology, Catholic University of Milan, Milan, Italy.